Critical race theory as a tool for understanding poor engagement along the HIV care continuum among African American/Black and Hispanic persons living with HIV in the United States: a qualitative exploration

Robert Freeman, Marya Viorst Gwadz, Elizabeth Silverman, Alexandra Kutnick, Noelle R Leonard, Amanda S Ritchie, Jennifer Reed, Belkis Y Martinez, Robert Freeman, Marya Viorst Gwadz, Elizabeth Silverman, Alexandra Kutnick, Noelle R Leonard, Amanda S Ritchie, Jennifer Reed, Belkis Y Martinez

Abstract

Background: African American/Black and Hispanic persons living with HIV (AABH-PLWH) in the U.S. evidence insufficient engagement in HIV care and low uptake of HIV antiretroviral therapy, leading to suboptimal clinical outcomes. The present qualitative study used critical race theory, and incorporated intersectionality theory, to understand AABH-PLWH's perspectives on the mechanisms by which structural racism; that is, the macro-level systems that reinforce inequities among racial/ethnic groups, influence health decisions and behaviors.

Methods: Participants were adult AABH-PLWH in New York City who were not taking antiretroviral therapy nor well engaged in HIV care (N = 37). Participants were purposively sampled for maximum variation from a larger study, and engaged in semi-structured in-depth interviews that were audio-recorded and professionally transcribed verbatim. Data were analyzed using a systematic content analysis approach.

Results: We found AABH-PLWH experienced HIV care and medication decisions through a historical and cultural lens incorporating knowledge of past and present structural racism. This contextual knowledge included awareness of past maltreatment of people of color in medical research. Further, these understandings were linked to the history of HIV antiretroviral therapy itself, including awareness of the first HIV antiretroviral regimen; namely, AZT (zidovudine) mono-therapy, which was initially prescribed in unacceptably high doses, causing serious side effects, but with only modest efficacy. In this historical/cultural context, aspects of structural racism negatively influenced health care decisions and behavior in four main ways: 1) via the extent to which healthcare settings were experienced as overly institutionalized and, therefore, dehumanizing; 2) distrust of medical institutions and healthcare providers, which led AABH-PLWH to feel pressured to take HIV antiretroviral therapy when it was offered; 3) perceptions that patients are excluded from the health decision-making process; and 4) an over-emphasis on antiretroviral therapy compared to other non-HIV related priorities. We found that although participants were located at the intersection of multiple social categories (e.g., gender, social class, AABH race/ethnicity), race/ethnicity and social class were described as primary factors.

Conclusions: Critical race theory proved useful in uncovering how macro-level structural racism affects individual-level health decisions and behaviors. HIV clinical settings can counter-balance the effects of structural racism by building "structural competency," and interventions fostering core self-determination needs including autonomy may prove culturally appropriate and beneficial for AABH-PLWH.

Keywords: African American; Antiretroviral therapy initiation; Black; Critical race theory; HIV care continuum; HIV/AIDS; Health equity; Hispanic; Qualitative; Structural barriers.

References

    1. Yehia BR, Fleishman JA, Metlay JP, Moore RD, Gebo KA. Sustained viral suppression in HIV-infected patients receiving antiretroviral therapy. JAMA. 2012;308(4):339–342. doi: 10.1001/jama.2012.5927.
    1. Antiretroviral Therapy Cohort Life expectancy of individuals on combination antiretroviral therapy in high-income countries: a collaborative analysis of 14 cohort studies. Lancet. 2008;372(9635):293–299. doi: 10.1016/S0140-6736(08)61113-7.
    1. Thompson MA, Aberg JA, Hoy JF, et al. Antiretroviral treatment of adult HIV infection: 2012 recommendations of the International Antiviral Society-USA panel. JAMA. 2012;308(4):387–402. doi: 10.1001/jama.2012.7961.
    1. Bradley H, Hall HI, Wolitski RJ, et al. Vital Signs: HIV diagnosis, care, and treatment among persons living with HIV--United States, 2011. MMWR Morb Mortal Wkly Rep. 2014;63(47):1113–1117.
    1. Centers for Disease Control and Prevention. Today's HIV/AIDS Epidemic. Available at: . Accessed 27 May 2016.
    1. Samji H, Cescon A, Hogg RS, et al. Closing the gap: increases in life expectancy among treated HIV-positive individuals in the United States and Canada. PLoS One. 2013;8(12):e81355. doi: 10.1371/journal.pone.0081355.
    1. Pellowski JA, Kalichman SC, Matthews KA, Adler N. A pandemic of the poor: Social disadvantage and the U.S. HIV epidemic. Am Psychol. 2013;68(4):197–209. doi: 10.1037/a0032694.
    1. Gee GC, Walsemann KM, Brondolo E. A Life Course Perspective on How Racism May Be Related to Health Inequities. Am J Public Health. 2012;102(5):967–974. doi: 10.2105/AJPH.2012.300666.
    1. Musa D, Schulz R, Harris R, Silverman M, Thomas SB. Trust in the Health Care System and the Use of Preventive Health Services by Older Black and White Adults. Am J Public Health. 2009;99(7):1293–1299. doi: 10.2105/AJPH.2007.123927.
    1. Shavers VL, Fagan P, Jones D, et al. The State of Research on Racial/Ethnic Discrimination in The Receipt of Health Care. Am J Public Health. 2012;102(5):953–966. doi: 10.2105/AJPH.2012.300773.
    1. Whiteside YO, Cohen SM, Bradley H, et al. Progress along the continuum of HIV care among blacks with diagnosed HIV- United States, 2010. MMWR Morb Mortal Wkly Rep. 2014;63(5):85–89.
    1. Saha S, Korthuis PT, Cohn JA, et al. Primary Care Provider Cultural Competence and Racial Disparities in HIV Care and Outcomes. J Gen Intern Med. 2013;28(5):622–629. doi: 10.1007/s11606-012-2298-8.
    1. Bogart LM, Wagner G, Galvan FH, Banks D. Conspiracy beliefs about HIV are related to antiretroviral treatment nonadherence among african american men with HIV. J Acquir Immune Defic Syndr. 2010;53(5):648–655.
    1. Nordqvist O, Sodergard B, Tully MP, Sonnerborg A, Lindblad AK. Assessing and achieving readiness to initiate HIV medication. Patient Educ Couns. 2006;62(1):21–30. doi: 10.1016/j.pec.2005.09.014.
    1. Mimiaga MJ, Reisner SL, Grasso C, et al. Substance use among HIV-infected patients engaged in primary care in the United States: findings from the Centers for AIDS Research Network of Integrated Clinical Systems cohort. Am J Public Health. 2013;103(8):1457–1467. doi: 10.2105/AJPH.2012.301162.
    1. Tegger MK, Crane HM, Tapia KA, et al. The effect of mental illness, substance use, and treatment for depression on the initiation of highly active antiretroviral therapy among HIV-infected individuals. AIDS Patient Care STDs. 2008;22(3):233–243. doi: 10.1089/apc.2007.0092.
    1. Gwadz M, Cleland CM, Applegate E, et al. Behavioral Intervention Improves Treatment Outcomes Among HIV-Infected Individuals Who Have Delayed, Declined, or Discontinued Antiretroviral Therapy: A Randomized Controlled Trial of a Novel Intervention. AIDS Behav. 2015;19(10):1801–1817. doi: 10.1007/s10461-015-1054-6.
    1. Beer L, Fagan JL, Garland P, et al. Medication-related barriers to entering HIV care. AIDS Patient Care STDs. 2012;26(4):214–221.
    1. Siegel K, Karus D, Schrimshaw EW. Racial differences in attitudes toward protease inhibitors among older HIV-infected men. AIDS Care. 2000;12(4):423–434. doi: 10.1080/09540120050123828.
    1. Chesney M. Adherence to HAART regimens. AIDS Patient Care STDs. 2003;17(4):169–177. doi: 10.1089/108729103321619773.
    1. Catz SL, Kelly JA, Bogart LM, Benotsch EG, McAuliffe TL. Patterns, correlates, and barriers to medication adherence among persons prescribed new treatments for HIV disease. Health Psychol. 2000;19(2):124–133. doi: 10.1037/0278-6133.19.2.124.
    1. Mills EJ, Nachega JB, Bangsberg DR, et al. Adherence to HAART: a systematic review of developed and developing nation patient-reported barriers and facilitators. PLoS Med. 2006;3(11):e438. doi: 10.1371/journal.pmed.0030438.
    1. Greysen SR, Horwitz LI, Covinsky KE, et al. Does social isolation predict hospitalization and mortality among HIV+ and uninfected older veterans? J Am Geriatr Soc. 2013;61(9):1456–1463. doi: 10.1111/jgs.12410.
    1. Earnshaw VA, Bogart LM, Dovidio JF, Williams DR. Stigma and racial/ethnic HIV disparities: Moving toward resilience. Am Psychol. 2013;68(4):225–236. doi: 10.1037/a0032705.
    1. Arnold EA, Rebchook GM, Kegeles SM. ‘Triply cursed’: racism, homophobia and HIV-related stigma are barriers to regular HIV testing, treatment adherence and disclosure among young Black gay men. Cult Health Sex. 2014;16(6):710–722. doi: 10.1080/13691058.2014.905706.
    1. Sumartojo E. Structural factors in HIV prevention: Concepts, examples, and implications for research. AIDS. 2000;14(Suppl 1):S3–S10. doi: 10.1097/00002030-200006001-00002.
    1. DeNavas-Walt C, Proctor BD, Smith JC, U.S. Census Bureau. Current Population Reports, P60-243, Income, Poverty, and Health Insurance Coverage in the United States: 2011. Available at: . Accessed 5 Dec 2016.
    1. Tobias CR, Cunningham W, Cabral HD, et al. Living with HIV but without medical care: barriers to engagement. AIDS Patient Care STDs. 2007;21(6):426–434. doi: 10.1089/apc.2006.0138.
    1. Marmot M, Friel S, Bell R, et al. Closing the gap in a generation: health equity through action on the social determinants of health. Lancet. 2008;372(9650):1661–1669. doi: 10.1016/S0140-6736(08)61690-6.
    1. Ford CL, Airhihenbuwa CO. Critical race theory, race equity, and public health: Toward antiracism praxis. Am J Public Health. 2010;100(Suppl 1):S30–S35. doi: 10.2105/AJPH.2009.171058.
    1. Delgado R, Stefancic J, editors. Critical race theory: An Introduction. 2. New York: New York University Press; 2012.
    1. Veenstra G. Race, gender, class, and sexual orientation: intersecting axes of inequality and self-rated health in Canada. Int J Equity Health. 2011;10(1):3. doi: 10.1186/1475-9276-10-3.
    1. Powell JA. Structural racism: Building upon the insights of John Calmore. NCL Rev. 2007;86:791–816.
    1. Solorzano DG, Yosso TJ. Critical Race Methodology: Counter-Storytelling as an Analytical Framework for Education Research. Qual Inq. 2002;8(1):23–44. doi: 10.1177/107780040200800103.
    1. Etherington N. Race, Gender, and the Resources That Matter: An Investigation of Intersectionality and Health. Women Health. 2015;55(7):754–777. doi: 10.1080/03630242.2015.1050544.
    1. Malmusi D, Borrell C, Benach J. Migration-related health inequalities: Showing the complex interactions between gender, social class and place of origin. Soc Sci Med. 2010;71(9):1610–1619. doi: 10.1016/j.socscimed.2010.07.043.
    1. New York City Department of Health and Mental Hygiene. HIV Surveillance Annual Report, 2014. Available at: . Accessed 16 Nov 2016.
    1. Wiewel EW, Braunstein SL, Xia Q, Shepard CW, Torian LV. Monitoring outcomes for newly diagnosed and prevalent HIV cases using a care continuum created with New York city surveillance data. J Acquir Immune Defic Syndr. 2015;68(2):217–226. doi: 10.1097/QAI.0000000000000424.
    1. Messeri PA, Abramson DM, Aidala AA, Lee F, Lee G. The impact of ancillary HIV services on engagement in medical care in New York City. AIDS Care. 2002;14(Suppl 1):S15–S29. doi: 10.1080/09540120220149948.
    1. New York State Department of Health. Purpose, background & population served. Available at: . Accessed 13 July 2015.
    1. Bureau of HIV/AIDS Epidemiology. HIV/AIDS surveillance annual report: for cases diagnosed through December 2012. Available at: . Accessed 15 Dec 2016.
    1. Centers for Disease Control and Prevention. Risk by racial/ethnic groups. Available at: . Accessed 14 July 2015.
    1. New York City Department of Health and Mental Hygiene. HIV Surveillance Annual Report, 2013. Available at: . Accessed 14 Aug 2015.
    1. Gwadz M, Applegate E, Cleland C, et al. HIV-infected individuals who delay, decline, or discontinue antiretroviral therapy: comparing clinic- and peer-recruited cohorts. Front Public Health. 2014;2:81. doi: 10.3389/fpubh.2014.00081.
    1. Dicicco-Bloom B, Crabtree BF. The qualitative research interview. Med Educ. 2006;40(4):314–321. doi: 10.1111/j.1365-2929.2006.02418.x.
    1. Little RJA, Rubin DB. Statistical Analysis With Missing Data. 2. Hoboken: Wiley; 2002.
    1. Neuendorf KA. The content analysis guidebook. Thousand Oaks: Sage Publications, Inc.; 2002.
    1. Mayring P. Qualitative content analysis. Forum Qual Soc Res. 2000;1(2):Art. 20.
    1. Marecek J, Fine M, Kidder L. Working between Two Worlds Qualitative Methods and Psychology. In: Tolman DL, Brydon-Miller M, editors. Subjects to Subjectivities: A Handbook of Interpretive and Participatory Methods. New York: New York University Press; 2001. pp. 29–41.
    1. Maxwell JA. In: Qualitative research design: An interactive approach. 3. Bickman L, Rog DJ, editors. Thousand Oaks: Sage Publications; 2012.
    1. Drisko J, Maschi T. Content analysis. New York: Oxford University Press; 2016.
    1. Wolf ZR. Exploring the audit trail for qualitative investigations. Nurse Educ. 2003;28(4):175–178. doi: 10.1097/00006223-200307000-00008.
    1. Clark PA. A legacy of mistrust: African-Americans, the medical profession, and AIDS. Linacre Q. 1998;65(1):66–88.
    1. Oggins J. Notions of HIV and medication among multiethnic people living with HIV. Health Soc Work. 2003;28(1):53–62. doi: 10.1093/hsw/28.1.53.
    1. Timmermans S, Almeling R. Objectification, standardization, and commodification in health care: a conceptual readjustment. Soc Sci Med. 2009;69(1):21–27. doi: 10.1016/j.socscimed.2009.04.020.
    1. Weiser J, Beer L, West BT, et al. Qualifications, Demographics, Satisfaction, and Future Capacity of the HIV Care Provider Workforce in the United States, 2013–2014. Clin Infect Dis. 2016;63(7):966–975. doi: 10.1093/cid/ciw442.
    1. Vahey DC, Aiken LH, Sloane DM, Clarke SP, Vargas D. Nurse burnout and patient satisfaction. Med Care. 2004;42(2 Suppl):II57–II66.
    1. Casalino LP, Crosson FJ. Physician Satisfaction and Physician Well-Being: Should Anyone Care? Prof Professionalism. 2015;5(1):1–12.
    1. Bird ST, Bogart LM, Delahanty DL. Health-related correlates of perceived discrimination in HIV care. AIDS Patient Care STDs. 2004;18(1):19–26. doi: 10.1089/108729104322740884.
    1. Bogart LM, Landrine H, Galvan FH, Wagner GJ, Klein DJ. Perceived discrimination and physical health among HIV-positive Black and Latino men who have sex with men. AIDS Behav. 2013;17(4):1431–1441. doi: 10.1007/s10461-012-0397-5.
    1. Sue DW, editor. Microaggressions and marginality: Manifestation, dynamics, and impact. Hoboken: Wiley; 2010.
    1. Smedley BD, Stith AY, Nelson AR, editors. Unequal treatment: confronting racial and ethnic disparities in health care. Washington D.C.: National Academies Press; 2003.
    1. Dovidio JF, Penner LA, Albrecht TL, et al. Disparities and distrust: The implications of psychological processes for understanding racial disparities in health and health care. Soc Sci Med. 2008;67(3):478–486. doi: 10.1016/j.socscimed.2008.03.019.
    1. Westergaard RP, Beach MC, Saha S, Jacobs EA. Racial/ethnic differences in trust in health care: HIV conspiracy beliefs and vaccine research participation. J Gen Intern Med. 2014;29(1):140–146. doi: 10.1007/s11606-013-2554-6.
    1. Bogart LM, Thorburn S. Are HIV/AIDS conspiracy beliefs a barrier to HIV prevention among African Americans? J Acquir Immune Defic Syndr. 2005;38(2):213–218. doi: 10.1097/00126334-200502010-00014.
    1. Deci EL, Ryan RM. Self-determination theory: A macrotheory of human motivation, development, and health. Can Psychol. 2008;49(3):182. doi: 10.1037/a0012801.
    1. Quinlivan EB, Messer LC, Roytburd K, Blickman A. Unmet core needs for self-determination in HIV-infected women of color in medical care. AIDS Care. 2016;29(5):1–9.
    1. Vansteenkiste M, Williams GC, Resnicow K. Toward systematic integration between self-determination theory and motivational interviewing as examples of top-down and bottom-up intervention development: autonomy or volition as a fundamental theoretical principle. Int J Behav Nutr Phys Act. 2012;9:23. doi: 10.1186/1479-5868-9-23.
    1. Miller WR, Rollnick S. Motivational Interviewing: Helping People Change. 3. New York: Guilford Press; 2012.
    1. Hettema JE, Hendricks PS. Motivational interviewing for smoking cessation: a meta-analytic review. J Consult Clin Psychol. 2010;78(6):868–884. doi: 10.1037/a0021498.
    1. Gwadz MV, Leonard NR, Cleland CM, et al. The effect of peer-driven intervention on rates of screening for AIDS clinical trials among African Americans and Hispanics. Am J Public Health. 2011;101(6):1096–1102. doi: 10.2105/AJPH.2010.196048.
    1. Gwadz M, Cleland CM, Belkin M, et al. ACT2 peer-driven intervention increases enrollment into HIV/AIDS medical studies among African Americans/Blacks and Hispanics: A cluster randomized controlled trial. AIDS Behav. 2014;18(12):2409–2422. doi: 10.1007/s10461-014-0829-5.
    1. Wagner GJ, Bogart LM, Mutchler MG, et al. Increasing Antiretroviral Adherence for HIV-Positive African Americans (Project Rise): A Treatment Education Intervention Protocol. JMIR Res Protoc. 2016;5(1):e45. doi: 10.2196/resprot.5245.
    1. Metzl JM, Hansen H. Structural competency: Theorizing a new medical engagement with stigma and inequality. Soc Sci Med. 2014;103:126–133. doi: 10.1016/j.socscimed.2013.06.032.
    1. Herbst JH, Kay LS, Passin WF, et al. A systematic review and meta-analysis of behavioral interventions to reduce HIV risk behaviors of Hispanics in the United States and Puerto Rico. AIDS Behav. 2007;11(1):25–47. doi: 10.1007/s10461-006-9151-1.
    1. Darbes L, Crepaz N, Lyles C, Kennedy G, Rutherford G. The efficacy of behavioral interventions in reducing HIV risk behaviors and incident sexually transmitted diseases in heterosexual African Americans. AIDS. 2008;22(10):1177–1194. doi: 10.1097/QAD.0b013e3282ff624e.

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